However, in less than a year, Alex went from playing doubleheaders, to having double-header stem cell transplants, ultimately losing his sight, hearing, and ability to walk.

In May 2012, Alex was diagnosed with Adrenoleukodystrophy, or ALD. It's a deadly genetic disease that affects roughly 1 in 18,000 people. It mostly impacts boys and men, and the most devastating form appears in childhood generally between the ages of 4 and 10 years old. The brain disorder destroys the myelin, or protective shield that surrounds the brain's nerve cells, and often leads to death within 2-5 years from diagnosis.

Alex's parents, Gene and Carissa Oxford say they were completely caught off guard, and this disease has devastated their family.

"There's no reason this disease does not deserve national exposure," said Carissa. "No family, no mothers, fathers, sisters, No one should have to go through this."

Carissa said her son was diagnosed with ADHD (attention deficit hyperactivity disorder) two years prior to being diagnosed with ALD. She said he began exhibiting behavioral problems and had difficulty concentrating. However, these symptoms are also the first signs of ALD.

While ALD has no cure, there are treatments to help stop the progression of the disease. The Oxfords say the misdiagnosis may have cost their son his life.

"The key is to find it early. So that two years of misdiagnosing ADHD, that's what gets you because by the time you realize it's not, there's already progression in the brain," said Gene Oxford.

David Cry, who runs the Adrenoleukodystrophy Foundation in Slidell, says symptoms begin to happen in kids between the ages of 4 and 10. As the disease ravages the brain, the symptoms grow worse, including blindness, deafness, seizures, and loss of muscle control.

In word word, he describes it as "a nightmare."

"Mothers and fathers are not supposed to lose their children. This is the reverse form of Nature. Watching your child suffer in a manner a boy does with ALD is the most ridiculous thing I've ever experienced or seen," said Cry.

Cry has seen the disease's devastation firsthand. He was diagnosed with the adult form of ALD at the age of 29, losing feeling in his lower body. Most recently, he has had to watch his son Logan battle the adolescent form.

For more than a decade, Cry has been working to make ALD screening in newborns mandatory for the state of Louisiana. In September, he will see his work come to fruition.

"In dealing with a condition like ALD, something that's fatal, something that's life altering, I think it's better to find out on day one, than find out when it could potentially be too late," said Cry.

"By doing newborn screening, we're going to open ourselves up to better patient education, allowing families to become more proactive, which is better than reactive," said Cry.

While this new screening measure is a step forward, Cry says more research is still needed to target ALD, and to tailor treatments to patients.

The Oxford's are also urging parents who have children before September to get their children tested for ALD.

"It may not be ADHD. Just have an MRI done, bloodwork done, have something done to make sure it's OK," said Gene Oxford.

"I tell my pregnant friends who have a son, I ask them to test during newborn testing. Ask them to test for that. Why not? Why wait for the state," Carissa said.

Until then, the Oxfords are waiting for a cure to heal their son.

The University of Minnesota performed the two stem cell transplants on Alex, which may have bought him five more years of life.

The university specializes in ALD treatment, and any money donated by the Oxfords goes to help fund research at the university.

"They have run out of money to be able to move forward and that's incredible to me. But that is what's holding us up. We need a monkey with ALD to try and cure it and they can't get the research money to get one," said Carissa.